Alzheimers: When should someone not be left alone?

Posted by suerc @suerc, May 19, 2019

I have a neighbor who just got a Dx of alzheimer. My mom passed away from this in Feb so I know what is all about. We could see him in the past or starting to repeat himself. My question for you is his wife travels to see her elderly dad out of state about every other weekend. Should we be worried about him at this point. He has taken care of our pets for weekends at a time but lately we have to write everything down and he has still. Even calling us asking us what to do.

@sallysue

Thank you for the first half of the story. Was he diagnosed with Alzheimer’s? Do these outbursts happen to most Alzheimer’s people? This scares me. So far my sister is quiet and compliant. She has had dementia for about 7 years. Is this something my husband and I need to watch and prepare for? Sallysue

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Hi @sallysue I am no expert on dementia at all, but I did work for years as a fundraiser for the national Alzheimer's Association and their medical research program. The disease can be quite different in each person. I think this is true of how most brain diseases act on folks. I know my wife reacted very differently to her brain cancer than anyone else I've met.

My MIL never experienced any hostility in all the years she fought it, but it is a fairly common symptom of the disease. On the other hand my daughter-in-law's father had quite a few months of hostile activity, which then stopped as suddenly as it started.

These types of things are so very painful to discuss, but if I learned one thing from my wife it was to talk and make decisions as soon as you can. As incredibly sad and uncomfortable as many of our discussions were, it made the journey a bit less rugged knowing I was able to follow what she wanted and our adult children and I never had to play the 'what would Mom have wanted' game.

Strength, courage, and peace!

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Thank you. That is very helpful. It just sends me into panic mode to think of the future of my sister who is very healthy. We did manage to have the driving talk with her and she admitted that she didn’t need the car since we go everywhere together. My husband talked to her from the financial aspect that it was an 11 year old car and she would never get a better price on it than now while it was in good shape. Our niece was looking for a car and offered the Bluebook price for it and my sister jumped on it to help her out! It was all legitimate but slightly staged by having the whole thing worked out before we started the talks. She was sad to have it pull away from the house but she was genuinely relieved that she didn’t have the upkeep on it to worry about and had all this money in her bank account. God was in it ALL. So I guess if she becomes confrontational or violent we shall depend on Him again. Plan B is to sell the house, split the money and get her in somewhere nearby where my husband and I can live separately from her. The only new thing with her is that she sleeps SO much. Thanks for talking with me. I feel so much better and calmer telling you the car story and remembering that it may all work out to the positive too. Thank you.

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@sallysue

Thank you for the first half of the story. Was he diagnosed with Alzheimer’s? Do these outbursts happen to most Alzheimer’s people? This scares me. So far my sister is quiet and compliant. She has had dementia for about 7 years. Is this something my husband and I need to watch and prepare for? Sallysue

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@sallysue As @IndianaScott said, there is a whole host of manifestations! For my mother, there was no hostility, basically she just shut down. She had a combination of Alzheimer's and Dementia and became pretty much mute for the last several years of her life. She stopped driving about 8 yrs before her death. She would sometimes eat if you put food in front of her otherwise you had to feed her. She slept a lot. She would sit in a chair and just look out at things; it was one of those "lights are on but nobody's home" type of expressions on her face. [A sad story here. My mother was a lifelong smoker, even though she supposedly tried to quit several times. My father continued to light cigarettes and give them to her. Some little remote corner of her mind knew to smoke those cigarettes. A year after she had passed, as he was moving out of their house, he found several cigarettes that had been lit but slipped out of her hand and apparently rolled under the couch. In his grief and sorrow his comment was, "I never knew about these. I wonder if God told me it wasn't time yet and he let them burn out rather them starting a fire." My heart just had to break for him at that comment.
Ginger

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@sallysue

Thank you. That is very helpful. It just sends me into panic mode to think of the future of my sister who is very healthy. We did manage to have the driving talk with her and she admitted that she didn’t need the car since we go everywhere together. My husband talked to her from the financial aspect that it was an 11 year old car and she would never get a better price on it than now while it was in good shape. Our niece was looking for a car and offered the Bluebook price for it and my sister jumped on it to help her out! It was all legitimate but slightly staged by having the whole thing worked out before we started the talks. She was sad to have it pull away from the house but she was genuinely relieved that she didn’t have the upkeep on it to worry about and had all this money in her bank account. God was in it ALL. So I guess if she becomes confrontational or violent we shall depend on Him again. Plan B is to sell the house, split the money and get her in somewhere nearby where my husband and I can live separately from her. The only new thing with her is that she sleeps SO much. Thanks for talking with me. I feel so much better and calmer telling you the car story and remembering that it may all work out to the positive too. Thank you.

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My favorite thing about Connect is the sharing @sallysue That is a great outcome for your sister with driving. It was one of the more difficult early potholes we hit with my wife. Luckily she had an appointment at Mayo and her neuro-oncologist was able to get her a test on their driving simulator. She was sad she failed, but he was so good at explaining and ultimately he was the one who said 'no more driving' and since it was the doctor she accepted it more readily than she would have from me.

Sounds like you have some solid plans in place! Things change, but always wise to be prepared! I remember my wife and I once laughing over the time she said to me "Gee, Scott, what is this? Are we on about 'Plan Double Z' now?

I hope the sun is shining wherever you are today!

Strength, courage, and peace!

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@IndianaScott

Hi @providence1960 'horrible disease' for sure! In so many ways! You are right about the stress of something as simple as your phone ringing! Great to read you have some help — what a difference that can make!

Strength, courage, and peace

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My mom is on a roller coaster…she told me if her caregiver ever comes again she will throw her out! That’s what she tells me but than she tells the caregiver not to leave until I’m back home. I know there is humor in there somewhere! I’m so comforted by this group.

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@providence1960

My mom is on a roller coaster…she told me if her caregiver ever comes again she will throw her out! That’s what she tells me but than she tells the caregiver not to leave until I’m back home. I know there is humor in there somewhere! I’m so comforted by this group.

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Good afternoon, @providence1960 I recall those same feelings being exhibited by my wife. Hated having help, but inside very afraid to be alone or without help. Your 'roller coaster' analogy is perfect! Now that you say that I can even feel it again! In the beginning the big hills to climb and the huge drops, repeat, and repeat….then as the disease progressed it was more of those dang little ones — up, down, up, down, up, down.

We can all keep looking for that humor!

I am very pleased to hear you find some comfort in this group! Caregiving can be such an intense, isolating experience!

Continued strength, courage, and peace!

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@debrat1

Aww, so cute! I just hate it when people are so callous and decide to throw away an animal like trash. If your not going to be responsible then don’t get one. I agree. Ill tag you @gingerw to keep in loop. I kept telling mom that something was up with dad and she wouldn’t accept it. It even took me awhile. It’s strange looking back. Daddy was such an easy going, beloved and fun person who seldom lost his temper or said anything against others. There were several instances that I thought wow that is so unlike my dad. I remember exactly though when I realized something was definitely wrong though. He and mom were at my house and we, my mother and I, were discussing something about his mothers cooking being so good when I was small. When I say there was an explosion I’m not exaggerating. Out of the blue he exploded and jumped up screaming at me not to ever talk about his mother again and kept telling my mother to come on because he was leaving. I was dumbfounded. He went out the door. I told mom to wait and went after him. He was standing by the porch and I asked him what was wrong and if he’d sit down with me for a minute. I believe he was as confused as I was. He did sit and I asked him what was wrong and he said something about his mom again. I told him no one was talking bad and how much we all loved her. Then it was over. He came in and they stayed until the visit was over when it originally was going to be. I took mom aside and asked her about it. She aid he’d been doing strange things more often. That’s when I told her he has to see and doctor and can’t let it continue without knowing. I lost him a piece at a time after that. Long, slow and painful. One night my mom called me around 1:00am and says daddy has lost it and shoving her. I could hear him through the phone ranting. So not my father, he was gentle and my mother and him were best friends. I never heard a real argument between them. I live about two hours away from home there. I told her to tell daddy I wanted to talk to him. She told him and he got on the phone mad. He’s shouting she wouldn’t let him have the keys to the car. I was able to talk him down until he was calm and back to normal. He gave my mom the phone and I asked if she thought I should go over. She said no she thinks he’ll be fine now. I called the next morning and we discussed it. I explained that she can’t have him be physically combative towards you. He doesn’t mean it but that she could be hurt. It happened again in the middle of one night and we went through the same scenario. I told her after that, if it happens again she has to accept we will need to do something about it. My whole family are law enforcement officers and I’m well aware of something called a Baker Act. I’m sure everyone is aware too. I told her we were going to have to get him to the hospital and get him expedited help for not only her safety but his. A month or so later I drove over at 3:00 am in the rain after talking him down again. I got there and told daddy I wasn’t well and needed to go to the hospital and needed his help to go. I wanted this calm. When we got there I asked him to sit with mom a minute. Let me say this was not anything she wanted. I can’t explain how difficult it was for me. My daddy and I were very very close. I was his standing for a son. The oldest of two girls but a big tomboy. Daddy took me fishing, taught me basketball, took me to the place where the guys played pool and everywhere else I wanted with him. We were buddies. Anyway, I went in and explained the situation so they could have a heads up in case it went south. He was very calm and accepting. I think he understood.
This has gone on longer than I realized. I’ll finish in a later post but just wanted you to hear about my experience. Thanks!

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This is so similar to what I experienced with my husband and was directed by the social worker at VA Clinic to take him to Senior Behavioral Unit at the local hospital for evaluation. I wondered how we were going to get him to go, but he had complained of some chest pain a short while ago so I said the Dr. wanted him to go have it checked out. Worked and he willingly went. I was able to take to the Dr. before he went into exam room and fill him in on why we had brought him in. I was hardest thing I ever did to have him placed in a Care center, but the best for everyone. I couldn't care for him at home any longer.

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@sallysue

Thank you for the first half of the story. Was he diagnosed with Alzheimer’s? Do these outbursts happen to most Alzheimer’s people? This scares me. So far my sister is quiet and compliant. She has had dementia for about 7 years. Is this something my husband and I need to watch and prepare for? Sallysue

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Personality changes are common and may be short episodes or more lengthy. As dementia increases the changes become more permanent and noticeable

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@rmftucker

This is so similar to what I experienced with my husband and was directed by the social worker at VA Clinic to take him to Senior Behavioral Unit at the local hospital for evaluation. I wondered how we were going to get him to go, but he had complained of some chest pain a short while ago so I said the Dr. wanted him to go have it checked out. Worked and he willingly went. I was able to take to the Dr. before he went into exam room and fill him in on why we had brought him in. I was hardest thing I ever did to have him placed in a Care center, but the best for everyone. I couldn't care for him at home any longer.

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I know I am facing that down the road…even with caregiver assistance it is often overwhelming. We caregivers need to take care of us too…it’s a hard decision for us to make but the best for all .

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@providence1960

I know I am facing that down the road…even with caregiver assistance it is often overwhelming. We caregivers need to take care of us too…it’s a hard decision for us to make but the best for all .

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I agree @providence1960 and @rmftucker Caregiving is filled with times of overload, being overwhelmed, and misunderstood. Decisions regarding care are often challenging beyond anything we could have previously imagined.

As I have said more than once 'superheros only exist in the comics and not in caregivers'. Each one of us can only do what we are able to as we focus on what care our loved ones need — at any specific time. Then be ready to see it all change up in an instant and the demands and our abilities to meet them likewise change. Knowing we are making the best care decision can soothe our hearts, but rarely, if ever, make the decisions easy or easier.

Strength, courage, and peace

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Thinking about you today @suerc I hope things are going OK for you these days. Also hope your furry friends are all well, too!

Any changes with your neighbor?

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My husband was officially diagnosed with Stage 1 Alzheimer's in 2012. We used the various Alz. meds for about 4 years and we saw no significant improvement so decided to stop. I basically tried to follow the recommendation of good diet, exercise, and socialization. At age 74 he finally stopped skiing with his 84 year old buddy this past season but they still ride their bikes together occasionally-about 15 miles last month. He's able to walk our dog around the neighborhood as long as he stays on the same path; and many of our neighbors know him.

He's now in Stage 2 and is requiring more help with ADL's such as dressing and personal hygiene. He occasionally needs reminders about table manners, but so far we can still go out to eat with our friends. I can leave him alone for about 3 hrs. and he's content to stay home and watch TV. However, he can't read, write or tell me or our sons what our names are. If the phone rings he'll answer if if the caller ID says it's me, but then he can't remember how to hang up. He's having more and more trouble following directions, remembering which room is the bathroom, completing sentences, etc. He loves "talking" to people and especially kids. He has a wonderful sense of humor and people used to say that it was hard to believe he has Alz. My goal has been to keep him home with hired caregivers as long as possible (but not yet) and then admit him to the new VA home about 1 1/2 hrs. away where it would be really difficult for me to visit him, especially in the winter because we live in the Sierra Mts. of California. One of our sons lives only 10 mins. away but his family and job keep him really busy so I don't like to bother them for help too much-yet! I am so grateful for the support of caring friends.

My biggest concerns now is that in spite of how hard I try be patient, I sometimes get frustrated which makes him frustrated too. Recently he's had some bad temper outbursts that could have physically hurt me or my other son. I have A. Fib and a pace maker and expect to get a knee replacement soon. I know I need to take care of myself or I cant take care of him, but I am most concerned about these moments of rage even tho they are over in a few secs. and only happen a couple times a month-usually when we are over-tired and stressed. My family and friends are starting to be concerned about my safety.
It breaks my heart to think about having him have to go to a home sooner that I had "planned'. I'd appreciate any words of wisdom. I'm trusting the Lord to help me make good decisions, but know that He uses other people to give me good advice. Thanks!!

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